Photo: Delaware Valley Pain and Spine Institute

Pain Management

Pain can at times be debilitating. Many with hemophilia experience pain due to their condition, so part of living with a bleeding disorder is finding ways to better manage pain, whether at its source if due to a bleed or ongoing symptoms. Acute, short-term pain may be felt in a joint or muscle at the onset of a bleed and may worsen if treatment is not readily available. At the first sign of acute pain, clotting factor is recommended.

Long-term pain is defined as chronic. It can be caused by repeated joint damage and prevails more in older adults. Preventive measures can help stop symptoms from worsening over the years, so good management of acute pain is key.

For those with a bleeding disorder, pain as a result of a bleeding episode can result in acute and/or chronic pain issues. This information provides resources about many pain related issues in the form of presentations (recorded webinars, videos), downloads (articles, documents) and links to other resources.

Recent news regarding pain management:

HANDI Highlights Resources on Pain Management (August 2024)

As we enter the “dog days” of summer with high temperatures and heat weighing folks down throughout much of the US, it’s easy to become lethargic about one’s health, particularly when it comes to addressing issues of pain. This month, HANDI has chosen to feature several resources on the assessment and treatment of pain. 

Study Shows Pain and Mobility Issues Common with Moderate Hemophilia (August 2024)

Progressive joint disease caused by repeat bleeds, a condition known as hemophilic arthropathy, affects people with moderate hemophilia in Nordic countries regardless of age, commonly causing them pain and restricting their mobility, a study found.

What Happens to Joints After Frequent Bleeds? (February 2023)

Repeated bleeds can lead to lasting joint damage. That’s why it’s important to recognize bleeds and act quickly if one occurs.

Bleeding Disorders: What Your Pain Is Trying to Tell You (May 2023)

An overview of the types of pain you might experience, what you can do to manage pain at home, and when to see a provider.

Bleeding Disorders: What Your Pain is Trying to Tell You: An overview of the types of pain you might experience, what you can do to manage pain at home, and when to see a provider (August 2023)

Unfortunately, people with hemophilia are no strangers to pain and its many forms. Pain can vary in intensity and areas of the body, but thankfully each episode provides clues about the potential cause and possible pathways to treatment. That said, it’s not easy identifying what your pain indicates. 

What You Need to Know About Marijuana and CBD for Chronic Pain: A closer look at potential benefits and risks, along with what to look out for when evaluating products (2023)

A closer look at potential benefits and risks, along with what to look out for when evaluating products.

What You Should Know About Hematomas (2023)

Bruises and hematomas are similar, but they have some important differences. See what causes hematomas, what makes them unique, and how you can spot them.

How to Treat Bruises That Come With Bleeding Disorders (2023)

For members of the bleeding disorders community, bruises are common. But while they’re easy to get, there are also several ways to manage them. Use these methods to treat bruises.

Other Resources and Articles from the National Bleeding Disorder Foundation’s magazine, HemaWare, specifically related to pain management include:

What Happens to Joints After Frequent Bleeds

What Older People with Bleeding Disorders Need to Know About Osteoporosis

What You Should Know About Ministrokes

Four Reasons to Establish Care at a Hemophilia Treatment Center

Decoding Dizziness

How to Make Your Home Office More Ergonomic

What Women with Bleeding Disorders Need to Know About Joint Problems

Four Ways to Relieve Arthritis in Winter.

Presentations and Downloads:

Pain Management and Opioid Dependency (webinar)

Young Adults Hangout: Creative Strategies for Coping with Pain

National Hemophilia Foundation, Hemaware Pain Management

Pain can be a persistent and troubling side effect of living with an inheritable blood or bleeding disorder. Learn how to manage pain effectively and healthily.

Other Resources:

The Academy of Pain Medicine – Patient Center

Managing Pain Before it Manages You by Margaret Caudill

Pain Management in Hemophilia: Expert Recommendations

Source: Hemophilia Federation of America (HFA). 

Assessment and Management of Pain in Hemophilia Patients

Source: World Federation of Hemophilia

Chronic Pain in Patients with Hemophilia: A Clinical Assessment and Treatment Primer

Source: Practical Pain Management

Pain Management

Source: The Haemophilia Society

Medicare and Pain Management: An Easy-to-Understand Guide

Which pain management treatments for complex health conditions are covered by Medicare? Take a look.

Source: RetireGuide, LLC

Communicating with your Provider About Pain

Many people with bleeding disorders find that bleeding-related pain and joint damage impact their quality of life, according to patients and caregivers surveyed in the Hemophilia Experiences, Results and Opportunities (HERO) study conducted by Novo Nordisk.  This session will improve understanding of how pain affects people with bleeding disorders and will offer guidelines for managing acute and chronic pain.  It will also provide resources for communicating with your provider to ensure that pain associated with bleeding and joint damage is addressed appropriately. Learn more. Source: National Hemophilia Foundation

Navigating Pain

Many people with bleeding disorders find that bleeding-related pain and joint damage impact their quality of life. This session will improve understanding of how pain affects people with bleeding disorders and approaches for managing pain. It will also provide resources for communicating with your provider to ensure that pain associated with bleeding and joint damage is addressed appropriately. Learn more.

Pain Management: Tool Box Not a Pill Box

The session discusses pain related to bleeding disorders in the developmental stages and how infants, children and adolescents with bleeding episodes experience, express and cope with pain. It will review the latest research on management and assessment of pain in children and provide guidance on pain education for families and caregivers. Treatment and intervention strategies for physical therapists will be reviewed and followed by a group discussion. Learn more.

MASAC Document 260

Management of Chronic Pain in Persons with Bleeding Disorders: Guidance for Practical Application of The Centers for Disease Control’s Opioid Prescribing Guidelines. Read more.

Center for Disease Control (CDC): These resources from the Centers for Disease Control and Prevention addresses prescription opioid use and communication between patient and provider.

Promoting Safer and More Effective Pain Management

Safer, More Effective Pain Management 

Arthritis Foundation:

Leading the fight for the arthritis community, the Arthritis Foundation helps conquer everyday battles through life-changing information and resources, access to optimal care, advancements in science and community connections.

Arthritis Pain Management:  This comprehensive list of resources addresses a plethora of concerns related to pain associated with arthritis.

Treating Pain with Medical Marijuana:  This article from the Arthritis Foundation addresses the use of medical marijuana for arthritis and its potential benefits and cautions.
*HFA strongly encourages patients and caregivers to consult with their healthcare provider and follow all appropriate laws and regulations regarding medical marijuana in the state in which you reside.